I want to create this discussion that we can always go back to and analyze to understand some reasons for having Alopecia Universalis and possible helpful treatments

1- do you have AU?
2- when was the first ever onset of spots i.e at what age?
3- why do you think you developed it (hereditary, stress, hormones)?
4- do you have other autoimmune diseases?
5- any advice for treatments? Did your hair come back?

I am looking forward for your replies. I know many people are not active on this site anymore
But the more we can collect answers the better.

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Daughter has AU

She saw spot in October of 2012 and lost all hair by Jan 2013. 

Hereditary, grandmother on fathers side had a form of alopecia, aunt has Colitis disease, cousin has psoriasis

No other diseases, but a bit of ezema on occassion

Tried all of the treatments but am now on Xeljanz for 3 months and having some success. 

Hope that helps a bit

 

Thank you so much! Out of curiosity did her grandma have AU too? Thank you for sharing your experience.

She had androgenic Alopecia, at the time I just thought she have very thin hair. Now as I look back I realize it was a form of alopecia.

But this type of Alopecia is not autoimmune am i right?
first patch at 21.
23 became AU.

3 months before my first patch, my girlfriend left me, I dropped from school and had Financials problems. so yes a lot of stress.

my brother had a first patch at 37 years old! so now we know for sure it runs in the family. some of us has some eczema...

I tried xeljanz... I had some growth but nothing major. I stopped it after 7 months because I was paying 100% out of pocket...
Thank you! Did your brother also end up with AU? Im sorry to hear xeljanz didnt work:( I wonder why..i thought its the miracle drug..
20% to 25% of people are non responders. its like other biologics, but I will try again a higher dose. yes I am desperate.

also regarding your initial question, I did messed up my hormones at 19-20 years old... I don't know if it was a trigger for alopecia. I did bodybuilding and I took anabolic steroids. basically I went from being a muscular cocky guy to a ghost...
no my brother had only 1 patch, thank God.
I hope it works for next time..maybe you just need to give it more time

1- Yes I have AU
2- At 23 (went from a few patches to AU within a month)
3- Stress and genetic predisposition
4- No
5- My hair never came back, dermatologists told me to give up and accept the condition as there are no treatments for AU like there are for normal Areata

Hi thanks! Who in your family had it and did they also have AU?
Yes I have AU , I was 19 when it started, I'm sure I developed it because of trauma plus family history of auto- immune diseases. No I hAve no other auto immune diseases that I am aware of at this time.my hair has not come back except for slight regrowrh of my eyebrows 40 years ago. Lasted about a month then they fell out and I've had no regrowrh at all. I have no advice for treatments.
Thank you for sharing..appreciated.

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